The key to the medical mystery of Multiple Sclerosis

An idea for living with multiple sclerosis

To a person interested in science, multiple sclerosis is a compelling medical mystery, an unpredictable disease with an unknown cause. To someone who has just been diagnosed with the disease, it is a frightening intruder bringing the lifelong threat of debilitation and disability.

When I experienced my first two episodes of multiple sclerosis, in the early 1990’s, there were no medical treatments to reduce the likelihood of progression. The doctors told me there was nothing I could do.  I should just live my life.

In fact, I could do something. As a curious person who was also very scared, I could dig for information. I headed to the library at a nearby medical center and started reading about multiple sclerosis.

At that time, a lot of the information was epidemiology.  Where was the disease common? Where was it rare? What were the characteristics of populations with a high incidence? When I looked at the map of multiple sclerosis incidence, I noticed something interesting that none of the books were talking about. In regions with a temperate climate, the countries with high incidence were ones that consumed a lot of milk.  The countries with low incidence consumed very little milk.

I mentioned this observation to a relative who is a research physician, and he did a search of medical journals. Turned out some French scientists had just published a study that described and quantified this pattern.

So now there was something else I could do. I could try an experiment, with myself as the guinea pig.  If multiple sclerosis might be linked to milk consumption, what would happen if I stopped consuming milk? Would my outcome improve?

In 1995, I stopped eating any milk products whatsoever.  No cheese, butter, ice cream or yogurt. Nothing else in my diet changed. I was an omnivore who grew my own vegetables, beef, chicken and eggs, and I ate a lot of those things, as well as most other ordinary foods. An account of this experiment became the subject of my recent book Tracking a Shadow: My Lived Experiment With MS.

The experiment is ongoing, but preliminary results are in. When I was eating milk products, I had two flare-ups in a year and a half. In the twenty-seven years since I eliminated milk, I have had one mild flare-up, in 2004. I have never taken any multiple sclerosis medications. I’ve never suffered from fatigue and my only lingering symptom is some slight numbness in my hands.

A study group of one does not prove anything. MS is a variable disease and my good outcome could be chance.  But it does make me ask more questions.

In recent years, I dived back into learning about MS. Although the cause is still not known, other knowledge has expanded dramatically since 1995. I wanted to see if there is more information about the possible link between milk and MS.

The first thing I learned was that my personal experiment has not yet been replicated on a larger scale.  As far as I could find, no one has studied whether eliminating milk can improve the outcome of MS.

However, I did find information suggesting avenues for further inquiry. For instance, scientists investigating the increasing incidence of MS in Japan found that the gut flora in MS patients is different from the flora in the wider population. This suggests diet may be a factor, possibly by promoting inflammation. Separate data from the dairy industry in Japan shows that milk consumption has also been increasing.

A different line of inquiry came from a study in Quebec. MS is an autoimmune disease in which a person’s own T cells attack myelin in the central nervous system. The Quebec study demonstrated a cross-reaction in which myelin-reactive T cells from MS patients reacted to a protein from a virus that causes the common cold. That common cold virus also infects dairy cattle and is often present in their milk.

Besides looking at what has been learned about MS, I also wondered whether my own experience would be relevant to other people who have it. With the help of my family physician, I was able to get information about my genetic makeup and I learned that I belong to one of the genetic types most commonly associated with MS. So my case is not exceptional, and if any of my experience turns out to be useful, it could be useful for lots of people.

Someday, perhaps, the scientific community will look more closely at the link between milk and MS. In addition to finding out whether a diet change improves MS outcomes, a study of what underlies the connection could yield valuable information about the disease and possibly lead to new treatments.

***

Edith Forbes is the author of Tracking A Shadow: My Lived Experiment With MS, a memoir about the self-designed experiment that led her to identify a unique approach to the disease. She has also written four novels published by Seal Press in Seattle. She began her career in computer programming but abandoned it for less logical pursuits including farming, house renovation, and writing.  In addition to novels and her memoir, she has penned essays, poetry, screenplays and a cookbook.  She holds a degree in English from Stanford, was raised on a ranch in Wyoming and currently lives on a small farm in Vermont.

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